The Paralympics! on Monday, September 12, 2016


On Friday nights we tend to have “movie night” which usually means watching a show of one kind or another. On Thursday last week Oscar’s aqua PT happened to mention that the Paralympics had started and so on Friday for movie night we watched the Paralympics! This is something I believe I have never done before. Certainly Oscar has never seen them. He was blown away—as were David and I.

For folks who might not know, the Paralympics is an international sporting event planned in conjunction with the Olympic Games, taking place in the same arenas as the Olympics, with athletes who have disabilities. The training, the commitment, the seriousness of the events is parallel to that of the Olympics.

And we were blown away. To watch the way swimmers with one arm break world records. To watch blind runners with exactly as much power and precision as athletes in the, what should I call them, “regular” Olympics. To watch swimmers zooming out in their wheelchairs to prepare for their race, to watch athletes take the medal podiums (which are fully accessible) in wheelchairs. To simply be able to watch people whose bodies don’t align with society’s expected norm on the screen, any screen, is remarkable.

And these are Olympic athletes. Athletes who are war veterans, athletes who were born blind, athletes who have experienced a trauma that has changed the shape of their body, athletes who were born with part of an arm or a leg, or both missing. Athletes who were born with cerebral palsy, or spina bifida, or something that falls within the realm of muscular dystrophy. Athletes who are like my boy.

As we were watching Oscar kept saying, “This is amazing. Look, she only has one leg. This is amazing. Watch her swim.”

And then he said, “It’s so cool there is an Olympics not just for people who are normal.”

Then there was a pause in which David and I each opened our mouths part way and before either of us had a chance to speak Oscar said, “I mean of course people with disabilities are normal. It’s not like they’re a monster. They’re still a human being. It’s just what some people think of them as not being normal even though they are.”

What a moment of pride. David and I locked eyes over Oscar’s head with the biggest smiles. How full our hearts.

In the last two days we have watched swimming (Oscar’s favorite), a little bit of wheelchair basketball, track and field including high jump, javelin, shot put (for which a man in a power wheelchair took the gold), 100m dash.

Here’s the catch of course: this is not aired on regular TV. I have never had cable, but if you do you can watch on NBCSN. The catch there is the hours the games are aired. Yesterday, for example, events were only aired from 1:30 a.m. to 5:00 a.m. Yes, the hours when nearly everyone in the country is sleeping. However, for the next four nights, there will actually be primetime viewing from 7-9 pm! And you can stream the games on

Also, great news (and how we were able to watch this weekend) is that there is livestream available for many events and for many hours in the day.

Here is the link:

The catch with this much more comprehensive live stream is that sometimes the events are aired with no sound coming from the arena. How bizarre to watch basketball without the sound of the ball hitting the floor or the backboard, the crowd cheering, the scuff of wheels on the wood floor.

And sometimes there is no commentary. So you can see an athlete strapped into a special chair, throwing their discus or shot put, you can watch as the athlete runs with the javelin and it lands and you can watch the landing point be marked, but no one is giving the usual Olympic commentary of who this athlete is, what their personal record is, who are their prime competitors, whether s/he is a medal contender or not. And other times it is like watching the Olympics—all the sounds, all the commentary, the stories of what accolades the athlete already has under his or her belt, what personal challenges they have overcome, who from their family is in the stands—the good, human interest story of any Olympics.

Regardless, it is worth watching. Please take ten minutes, or a half hour, or several hours this week. Sit down with your kids and watch with reverence these amazing athletes who are getting very little press, simply because they are disabled. Watching this international sporting event is a way to break down barriers, to normalize physical differences, to teach yourself and your family that yes, absolutely, people in wheelchairs, people with missing limbs, people who have curled-in hands, or a limp, or who are blind are normal people. Are extraordinary people who compete in international sporting events. Are people just like you and me.

Rhode Island! on Monday, August 29, 2016

We went to the ocean this summer! For a week! For the first time!

We rented a little house (400 square feet!) right on a salt water pond, a half a mile from the ocean, in southern Rhode Island. There was a near-constant ocean breeze blowing off the pond onto the deck (300 square feet! where we spent most of our time when we were at the cottage) and also in through the sliding doors and right through our little cottage. We read books, we played in the waves, we built things out of sand, we had lazy mornings, we found shells, we got eaten alive by mosquitoes, we stared at the sky and the ocean, we got sunburned, we explored a couple little towns, we had absolutely no agenda. It was bliss.

However, our week did not start out blissfully. Oscar woke up on the morning we were leaving with a sore throat and a runny/stuffy nose: a cold. I think we went through an entire box of tissues in the car on the way to Rhode Island. Oscar being sick is the single most stressful thing that happens in our lives, because we just never know how any given illness will manifest in his body or how serious (dangerous) it might get. Oscar and I both cried in the car on the way there. None of us breathed that easy light breath that comes with hitting the road toward vacation. My mind ran rampant with thoughts of where the nearest doctor might be, the nearest hospital, whether or not there are any doctors in Rhode Island that know anything about SMA. How much an out-of-network hospital visit might cost us. Whether or not any doctors there would be willing to listen to our pediatrician’s advice over the phone and not admit Oscar if his oxygen dipped low like it did back in June when he was sick.

We had all been looking forward to this vacation for a good solid year—from the time it was just a passing thought: hungering for the ocean, a week to just be, a real complete deep relaxation. And now that was all in question. It might not happen. My mind ran through all of the things Oscar had missed (or occasions on which he had been sick) in the last 18 months because of being sick: visiting author at school, a close friend’s birthday party, New Year’s Eve celebration with his cousins, Mother’s Day, Father’s Day, the entire last week of second grade (and his school is K-2, so he missed the end of this school altogether) including special theme days, the second grade assembly, the bus parade—and more. Now he might miss vacation, too? ARE YOU KIDDING ME?! Oh—and another thing, when Oscar gets sick, he always gets sick for a full week, so we prepared ourselves for Oscar being sick for the entire vacation.

It turned out to be a minor cold. We skipped the beach the first day (Sunday) and stayed at our cottage and read books and took a dip in the saltwater pond. Oscar had a low grade fever for 3-4 days and a stuffy nose for a bit longer. After Sunday we took him to the beach anyhow and the saltwater seemed to do wonders. My panic eased a good bit by Monday, diminishing each day and was completely gone by Thursday (we are never completely out of the woods with Oscar and illness until he is all the way better—there is always the chance for a relapse/secondary infection). Early morning walks alone to the ocean helped a great deal. David remained pretty calm the whole time.

Despite the fact that I just wrote three paragraphs about Oscar being sick while we were on vacation, it is not what any of us hold in our hearts about that trip. We hold onto the magic of being away. We hold onto the magic of being at the ocean. We hold onto the magic of not having anything on our calendars, our agendas. We also had a “google-free” vacation. No screens other than to check the weather or look up directions to somewhere we wanted to visit. Before we left Oscar even said, “I’m not going to use the iPad or watch while we’re on vacation, we’re going to be at the OCEAN!” It is profound how a week away from screen time can feel like a real detox. It was heavenly.

Oscar has seen the ocean twice before. Once when he was 9 months old (while visiting friends in Connecticut we took a couple days in Rhode Island). And once when he was 4 and we spent a day at the Pacific Ocean while visiting San Diego. So during our vacation we kept thinking, “What took us so long? Why didn’t we do this before?” David and I both have fond memories of ocean time from our childhoods that have helped shape us. Why had we not taken our boy to the ocean, for more than just a little peek, before now?

Well there are a couple answers to that question. For five out of the last seven years we have attended the national SMA conference, which is held in a different location every June. Several of those trips turned into 10-day vacations which included sight-seeing, visiting with friends or family, and the like (great trips, not relaxing at all). This year the conference was at Disneyland, same place it was three years ago—a long way to go and a location close to a lot of friends and favorite old haunts in San Diego. We decided to skip the conference this year so we could afford—from a time and money standpoint—a real ocean vacation.

IMG_4188The second answer is that this was the perfect year to be Oscar’s first year at the ocean. Oscar has grown leaps and bounds in his comfort level, confidence, and bravery in the water this year. Oscar has been doing aqua therapy since just before he turned four. Twice a week he practices swimming laps, sitting balance, trunk extension, stretching, and a whole host of other activities—most of which he has made up himself. He can do things in the water he can’t do out of the water because he has a sense of freedom in the water. And within the last year he has begun swimming under water. When he started, he was scared of even getting a drop of water on his face and now he has worked his way up to a whole variety of underwater activities.

So, the ocean was amazing! Oscar used his floaty neck ring and bobbed up and down on the waves, even the big ones. For the really big ones that were threatening to break right top of him, David would throw him up in the air over the wave and then catch him on the way down. Oscar felt the freedom of floating on his own with the ocean waves. He had a chance to ride some waves in to shore. He was ecstatic.

IMG_2996And on the last day when the waves were too big and breaking too fast for any of us to be particularly comfortable in the water David took Oscar into the shallower water right in the beach wheelchair so he could still ride the waves a little bit, even if he wasn’t submerged.

We fell in love with Rhode Island  and wish we could have stayed two weeks. We plan to go back.


A few more highlights from the week:


Oscar above one of the big waves

Oscar above one of the big waves


The beach wheelchair! Many public beaches have these available to use free of charge.

The beach wheelchair! Many public beaches have these available to use free of charge.


The view from the deck of our cottage

The view from the deck of our cottage


Our super friendly neighbors!

Our super friendly neighbors!


Frozen lemonade!

Frozen lemonade!


Black Lives Matter—a few words from this white woman/writer/mother on Monday, July 11, 2016

I have not gotten much sleep this past week. In the wake of the murders of Philando Castile and Alton Sterling I have been staying up late scrolling through headlines, Facebook posts, news articles, opinion pieces. Searching. Searching for something. Searching for meaning, understanding. Searching. Searching for humanity.

I haven’t been able to find words. But I have a burning in my throat—a need to speak. Silence is not an option.

I am a person who identifies as white, and I am a writer, a wordsmith. Because of these two realities, I find writing about race to be challenging. I am afraid of getting it wrong. Sounding too privileged or ignorant, choosing the wrong grouping of words and offending people of color with my word choice.

But an honest try that falls short is better, far far better, than not trying. Than silence. Silence is deadly. Silence is keeping racism alive. So kindly read along as I may fumble (I’m sorry if I do…).

This past week two black men were murdered by police officers in the United States. Alton Sterling, who was selling CDs in his usual spot in a parking lot outside a small market, was pinned to the ground by two officers and then shot to death. Philando Castile was stopped for a broken tail light, was asked for his license and registration, and was shot to death as he reached for his license.

I know that this is not new. African Americans have been being racially profiled by and killed by police officers for a long time. What is new are cell phone videos and social media. It’s becoming harder for the racism being perpetrated by these officers who are committing these inexcusable offenses to be hidden, to be swept under the rug.

I have not read a single detail that indicates that either of these men were doing anything illegal, or even suspicious. Nothing that would warrant either of them being shot at. But let’s consider the shooting part for a moment. What happened to the idea of shooting a “suspect” in the leg? To disarm or incapacitate, not to kill. How have we arrived at shooting at close range until dead?

Yesterday my family went with my sister’s family to the Renaissance Festival, just over an hour away. Our mini van filled with our white family followed their mini van filled with their white family, from one suburb through another, onto rural roads until we reached our destination. We noticed right away that one of their tail lights was out. This was nothing to be concerned about—it can be fixed at their convenience sometime in the coming weeks. Yet as we followed them for an hour I stared at that missing light and felt sick—knowing that if we were a black family, this could be cause to be killed.

KILLED. For having a broken tail light.

This is the Oscar-Go blog where I write—just every once in a great while these days—updates about how our boy Oscar is doing, what he is up to, disability issues that arise—a way to keep family, friends, and acquaintances informed of our life living with our sweet guy who happens to be disabled, a way to raise awareness about SMA and disability. So why am I writing about Alton Sterling and Philando Castile?

That’s why. And because this is the country we live in. This is the country my child is growing up in. A country where police officers are shooting and killing black men, and have been getting away with it. This is not a black problem. This is an American problem, and it affects the way I raise my child.

I am certain I have said or done things that are racist. Not because I meant to. Not because I believe in or stand behind racism in any way. But simply because I am white. I was raised by two socially conscious parents who have spent much of their lives fighting for justice, including racial justice, in many ways. Yet I am white. I am a product of the culture. My white privilege is a reality. A reality I am trying very hard to be much more aware of.

This piece by George Yancy, that was in the New York Times in December, has had a powerful impact on me.

He begins like this:

Dear White America,

I have a weighty request. As you read this letter, I want you to listen with love, a sort of love that demands that you look at parts of yourself that might cause pain and terror, as James Baldwin would say. Did you hear that? You may have missed it. I repeat: I want you to listen with love. Well, at least try.

You can read the whole thing here:

It’s not necessarily an easy or comfortable read, but racism sure isn’t easy or comfortable, is it?

I also highly recommend Ta-Nehisi Coate’s book, Between the World and Me which reads as a letter to his son about being black in America.

These two pieces of writing have recently expanded my vision and given me deeper perspective on racism in America today and my own white privilege.

So where do we go from here? What do we do now? What can we do? We speak. Clearly and directly about the racism we see. We educate with as much love and generosity as we can bear. We LISTEN. To what others have to say. To the way we use language. To the way others use language. We listen when others tell us our actions or words are harmful. We open our hearts.

What else? Please tell me what else can I do.

A Snowy Miracle on Wednesday, February 17, 2016

A small miracle happened today. We had a massive snow storm—about 18 inches in fewer than 18 hours. It fell fast enough to close down most of Rochester—which is no small feat. And when the town snow plow came by, it left NO SNOW in our driveway. That’s right. NONE.

Look! No snow dumped in our driveway!

We happened to be outside when the plow came by. The plow driver slowed to a stop, rolled her window down and said, “I’ve heard about your situation. We’re going to try something different today.”

Here’s what she did. About 20 feet before our driveway, she raised the plow off the ground, which caused all of the snow the plow was pushing to fall into the street. She then lowered the plow again as she reached our driveway, continuing to plow. She then turned around to plow the other side of the street, and when she reached the area where she had let the snow fall into the street, she drove into that side of the street and pushed the snow into our yard. Then backed up the 20 feet and continued on her way.

So a pile of snow sat in the road, on one side of the road, for about three minutes until she got to her turn-around point and came back. The maneuver of pushing the snow into our yard and then reversing to continue the usual route took about 30 extra seconds than the usual method of plowing.

30 SECONDS. Yep. For five years we have been told that there is nothing that could be done. This woman solved the problem in 30 seconds. And she was friendly, and kind—and she had been up since 2:00 am! She performed this maneuver at around 11:00 am, and again around 3:30 in the afternoon.

I will still meet with the town supervisor so we can firm up a long term plan. But it seems to me this amazing woman showed us today just what the long term plan could be. Thank you plow #56 driver!

David, Oscar, and I are truly grateful for the outpouring of support that arose from the initial blog post regarding the snow plow issue. I really had written the post to vent, in order to be able to fall asleep that night. The ensuing ideas and offers of help were amazing. We shouldn’t need an army of support to deal with accessibility issues, but we are deeply grateful we have one. Thank you for helping make accessibility a priority—for all people, not just for Oscar!

Oscar prepared for sledding this afternoon!

Oscar and David cruising through our yard!

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